Stroke Center consolidates expert care for rare brain disease

Theresa Rodriguez's symptoms baffled most physicians until she was diagnosed by experts at the Stanford Stroke Center with a rare condition called moyamoya disease.

For several months, Theresa Rodriguez struggled with recurrent episodes in which she would temporarily lose the ability to move or speak. One moment, she would be feeling fine; the next, the left side of her body would go numb. Her left hand couldn’t grasp, and she couldn’t rouse her tongue to form words. She was seen four times at two different hospitals and received only partial answers. “I had a spot on my brain,” she remembers physicians telling her. “They were baffled. All I could do was cry, ‘What is going on with me?’”

Rodriguez finally was referred to Stanford Hospital & Clinics’ Stroke Center, where she was evaluated by a full team of specialists. Their diagnosis: Those repeated moments of disconnection were strokes caused by moyamoya disease, one of the rarest cerebrovascular conditions known to medicine.

Fortunately for Rodriguez, Stanford has one of the nation’s foremost experts in moyamoya disease. Moreover, its 20-year-old Stroke Center is now the first in the nation to be certified as a comprehensive stroke center by the Joint Commission.

Standards of accreditation

The designation came after a team of experts from the Joint Commission, the nation’s largest health care accrediting organization, spent two days at the hospital in the fall, evaluating all aspects of its stroke program. They assessed compliance with the new comprehensive stroke center standards and requirements, such as advanced imaging and treatment capabilities, the 24/7 availability of specialized treatments, participation in research and the staff with the unique education and competencies to care for complex stroke patients. The surveyors found the hospital met or exceeded all required standards.

“We knew from the very start that the most effective way to battle complex stroke cases was to create a truly coordinated, multidisciplinary team that united specialists from every related field—not just in neurology, neurosurgery and interventional neuroradiology, but also experts in nursing, rehabilitation, emergency medicine and pharmacy, among others,” said Amir Dan Rubin, president and CEO of Stanford Hospital & Clinics. “This approach has improved patient outcomes and pioneered significant advances in stroke diagnosis and treatment.”

Nearly 1 million people in the United States were hospitalized by stroke in 2009, according to the federal Centers for Disease Control and Prevention. An estimated 7 million Americans have had some form of stroke. It was the fourth-leading cause of death in the United States in 2010.

Stanford established its stroke center in 1992. “What we recognized from the start was that the best care would come from going beyond issues about turf,” said Michael Marks, MD, the center’s director of interventional neuroradiology and one of its three founding physicians. “We have been blessed to work with people who are open-minded and interested in a common goal: taking care of patients by using their individual areas of expertise.”

The Stanford Stroke Center’s founding philosophy is the key to its success, said Greg Albers, MD, one of the center’s co-directors and founders. “To partner neurosurgery, neurology and interventional neuroradiology seemed sensible,” he said, “but it was a unique concept then.”
Combined expertise

The center also gained strength from the continuity of its leadership. “Our three original leaders are still together 20 years later,” said neurosurgeon Gary Steinberg, MD, PhD, co-director of the center and one of the founding members. “That’s unprecedented in stroke centers. What keeps us here is our shared enthusiasm for innovation and discovery—and our shared passion for helping patients.”

Fortuitously for Rodriguez, Steinberg is also one of the world’s leading experts on moyamoya and has treated more than 830 patients with the disease. Using a surgical technique he pioneered, Steinberg created a new set of arterial pathways in Rodriguez’s brain to bypass the areas blocked by her disease.

She was home three days later, ready to resume care of her four children and her first grandchild. Rodriguez said she still gets occasional headaches, but doctors have told her those will eventually subside. “I am very blessed,” she said. “Other people don’t get diagnosed for months or years. I’m already healing.”